Getting Listed

Before I get to the good news, I think it’s crucial to write about the last few months and what took place in that time. This is the much abridged version of events, however, seeing that I need to get everyone up to speed. Yet even if I had the luxury of time and space, I couldn’t possibly describe all that has transpired or all the emotions I’ve experienced since last I wrote. Bear with me here.

During my stay at the UW Madison Hospital this past February (see “I Hate CF”, posted February 24th, 2014) it was suggested that I complete a lung transplant evaluation just to see where I might fall on the list of others awaiting a transplant. Even though the infection I had in February was quite severe, I wasn’t thinking that I would really need to put myself on the list any time too soon.We simply wanted to present my case to the transplant team to see if I could even qualify to be listed at all.

So, we set the evaluation up for the second week of June. By the time I was set to return to Madison for the evaluation, I had realized I was at a point where I needed to get on the list. It was no longer a matter of experimentation. Things were now more serious. Therefore, the results of the tests I underwent would be of utmost importance. The evaluation was a four-day process to test, monitor, check, evaluate, and investigate all that is necessary to know about me when being considered for a transplant, including CT scans of my sinuses and chest, X-Rays, blood work, dental exam, acid reflux testing, heart catheterization, psychological consult, financial consult, cultures of my mucus, bone density scan, etc.

It was a bit taxing and extremely overwhelming, but I made it through the evaluation unscathed. Back at home, I assumed it would be at least a few weeks before the team could process my numbers and make their decision as to whether or not I could qualify to be put on the list. It took 4 days. I got the call in the afternoon.

My little balloon of hope burst when the transplant coordinator informed me that the team met and there was a problem. My sinuses showed some kind of infection or scarring or something. I could hardly focus on her voice after I heard that I was not able to be listed- things got muffled in my own head. My mom saw the dismay on my face, so she took over the call and spoke with the coordinator. We decided that another visit to Madison was necessary in order to see an Ear, Nose, and Throat Specialist (ENT). I felt hopeless. My sinuses seem to always be infected, so my worry was that this chronic problem would keep me from ever being put on the transplant list.

After analyzing my CT scans and looking into my frontal sinuses with a probing camera device that was pushed up my nostrils, it didn’t take very long for my ENT to conclude that my sinuses were actually pretty clear. He said there was no obvious infection and no real reason to operate on my sinuses, although after having had 5 sinus surgeries, a 6th wouldn’t have phased me. This was the outcome I was hoping for, even if it was the same one I had doubted would happen. (My credo: “Hope for the best but expect the worst.”) My ENT said he would pass along his findings to my transplant team, giving them the last piece of a puzzle that would hopefully show my need for this transplant. As far as I knew, there was nothing else standing in the way of me getting put on the transplant list. I felt cautiously triumphant. Again, I went home and waited by the phone.

Approximately one month later, on September 11th,the nation mourned and remembered those whose lives were lost. That same day, my life was potentially given a second chance, should I accept such a gift. My transplant coordinator called me again with a question that was so simple, it was much out of proportion to the weight that the answer would hold: “So, do you want to be put on the list for a lung transplant?”

This was the huge, life-changing question I’d been waiting for. Its immensity held sway over my every thought. The answer, though, had seemed straightforward until I was finally asked. Now, many things ran through my head. Too many. Especially when I was told that the list was relatively short at that point. I wasn’t quite ready. I decided to hold off on accepting a place on the transplant list. I explained that I was extremely thankful and honored to be offered this opportunity. However, I felt as though I needed to talk to my family, become more educated about the process, talk to someone who has had a lung transplant, and make sure I was emotionally ready. To be clear, I will say “yes”. It’s just a matter of when. Once I affirm that I want to be listed, there is no room for passivity. That is why I believe it’s prudent to wait until I’ve completely wrapped my head around the idea.

A transplant is such a bittersweet transaction. Like two souls exchanged, one life for one death. Am I worthy of this extraordinary gift? Can I live as good a life as the one whose breath I will breathe? Are we playing God? These are but a few of the thoughts that I am able to snatch out of the swift currents of my mind.

I am getting sicker, though. Once again I am writing this from my hospital room in the UW Madison Hospital. That’s my reality, so I don’t have long before I must list myself. Every few months now I feel a marked decline in my ability to breathe. Oxygen often eludes me- something invisible and intangible that makes or breaks me daily. This explains my absence on this blog. I’m often SO exhausted that my fingers can barely press hard enough on the keys of my laptop to relay my thoughts into text. I’m told that if I receive a lung transplant, I will have more energy and be able to breathe like a normal person. I just can’t fathom such a gift. However, it seems as though that dream is not as far off as I had thought.

If you are not an organ donor yet, please go to your state’s donor registry website and sign up today! As of October 18th, 2014, there are 123,938 people waiting for an organ that will save their lives. Some do not get that gift in time because the demand for organs is greater than the supply. Even if you have it marked on your driver’s license that you’d like to be a donor, the only way to be certain that your wishes will be carried out is to register yourself on the appropriate site. Don’t wait; BECOME A DONOR TODAY!

Michigan Donor Registry:

Wisconsin Donor Registry:

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5 Responses to Getting Listed

  1. Jacob DeWitt says:

    Thanks for writing this, I know I’m registered. I really hope you have more good days than bad, and I hope you find a donor.

  2. I hope you do get on the list soon. It’s worth it. The sooner the better. I got my first transplant in ’08 and I’m waiting for another one because I started rejecting 2.5 years ago. It is a gift that you will never regret taking advantage of the opportunity.

  3. Ellen McCarthy says:

    hi Lyn,
    Sounds like you are ready to have the transplant. Prayers are with you always….Wishing you the best.

  4. barbara robbins says:

    Dear Lyn,

    I cannot register as a donor because I am living with cancer, since melanoma diagnosed and removed in 1992, BUT I can spread the word to others. I have a book by my friend, a successful heart transplant recipient. Another friend is a happy teen with kidney transplant, in WI.

    I know you help many people, yourself.

    “With friends intent on making a difference, one smile at a time.” –BarbRobbins, First Presbyterian Church, Iron River, MI

  5. Patti says:

    Honest and Brave….because you want to be and have to be…it’s in your DNA. Love and prayers from Ontonagon.

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